I was speaking with a close cousin the other day (a healthcare provider in their own right), about a friend of theirs who was in the early stages of dealing with a cancer diagnosis. As we spoke, so many thoughts and emotions were rushing through my head. Paramount among them was that I am NOT a doctor, and that my MM experience is both a singular disease state and a unique journey unlike any others (not more/less special - just individual to me). Regardless, as we spoke and I shared what I had gone through (in the hopes that it could have any value to their friend with a different type of cancer, and a different set of circumstances), it legitimately felt like my reality could translate into comfort and guidance for them. Not answers, just a patch of blue sky on an otherwise cloudy day.
Some shared perspective:
- It's still in the shock phase for this friend/patient so I confirmed that for them and me and everyone else it is initially scary and overwhelming. As trite and bumper-sticker-ish as it sounds: Take it one visit, treatment or setback (adverse effect) at a time.
- They experienced some disturbing neuropathy after their first round of chemo. It can affect everyone differently. For me it felt like sand in my shoes; right foot only - - - for them it was much more severe. But to hear it was "common" could be very reassuring. They will share this with their Onc who will (should !) adjust the chemo accordingly.
- I was fortunate enough to have available meds to address the various stages of my treatment - as my needs ebbed and flowed. I reminded them that there are clinical trials out there (www.clinicaltrials.gov), that are worth exploring if they run up against difficulty with intervention options.
- The Cousin also shared that the friend was having trouble connecting with their Onc, and was not feeling regarded as part of the team or the process. I reiterated that they deserve a positive and collaborative relationship with their Onc and team, and to keep searching until they find that partnership. Their situation is not dire enough that it precipitates settling for anything less.
So if my dreams and intentions as The Canswer Man are realized, then even these basic tenets will help this friend, and serve as a positive contribution to their experience, treatment and outcome.
